Tuesday, September 30, 2008

Tuesday September 30

I am finally feeling a little better today, after feeling sick all weekend. I had a lot of visitors yesterday and it was fun to see how many people responded to the little wish list I posted on Sunday night. I now have several books to read, movies to watch and treats to hoard. Our family did drive up the canyon after dinner to see the beautiful fall foliage. It made me appreciate the mountains and the beautiful area where I live.

Today I was able to go visiting teaching. We had to wait until the last day of the month so I could feel up to getting out. I am hoping to start feeling better each day until I have a treatment again in 2 weeks. I'm grateful that my boys are happy, doing well in school, and keeping up with their daily routines. Brenton made dinner for us last night. Aren't teenagers great?

The Oprah Winfrey Show today was about breast cancer. Some of the guests on the show told of the need to support each other and not try to be "superwoman." Having cancer has taught me to be humble, to accept more help, to put my family and priorities first, and to accept the Lord's will in my life. We all have lessons to learn in life and some of them cannot be learned in any other way than through our trials. I am grateful for my opportunities to learn and I want to become the person God wants me to be.

Monday, September 29, 2008

Monday Sept. 29th

I had a hard time sleeping last night. Maybe it's because I rested so much on Sunday. My fever has gone down again, but I still have a sore throat and I feel like my bloated abdomen presses on my stomach. This morning I have had several visitors already. Peggy and Janice are my visiting teachers from church. Jenn, my sister-in-law, has already changed my bedding and started my laundry. A photographer from the Daily Herald is here taking photos. She will be following my story for breast cancer awareness month in October. I already got a response from the wish list I posted last night - a new book to read! Even though I get frustrated at being stuck at home, a friend is always willing to help me, like this morning when Nathan had a hole in his pants. She brought him home and I had to mend them.

I want to be awake and around when the boys get home from school at 3:00 PM. I don't know why, but that always seems to be the time my body is calling for a nap. That's why it was helpful to have my parents there after school, to make sure the boys got started on their homework and chores.

David wants to drive up to see the fall colors in AF canyon if I feel up to it tonight. It always depends on how I feel...

Sunday, September 28, 2008

Later on Sunday

My fever peaked at 101.1 degrees and has been going down since then. The fever was getting worse as my pain increased, so I am still working at better pain control. I have been thinking about my wish list this week. I would love to borrow some dvds or new release videos that you might have to keep me entertained while the kids are at school. I haven't been out to Blockbuster or the library recently and I miss my LDS fiction novels. I'm a quick reader, so it is not worth it for me to buy myself books, but I do like to borrow them. I guess you can tell I am getting tired of watching cable TV. Every day I hope I will feel well enough to start some of my scrapbooking again.

I also wish I was able to work and contribute toward the financial support of my family. Back in June, I took the Utah Mortgage License exam and signed up as a loan officer with Envision Lending Group. I was hoping to assist David in the business. The financial industry has been going up and down, but I don't know if our family finances are going to survive the waves. I am also interested in being a proof reader or editor, mostly for books. I have a Master's degree in Literature and I have always loved to read, so maybe I can find a free lance job to do in my "spare" time.

The last part of my wish list has to do with food. Since I haven't been doing all the shopping and my stomach has been hurting, I am craving some premium ice cream and European chocolate. Favorite flavors are hazelnut, cheesecake, mint, peanut butter and caramel. My favorite Chinese food is from China Isle, on 500 East, AF. They have the best mango chicken. My most recent favorite salad is shrimp and avocado from Applebee's. I especially love Cafe Rio vegetarian salad, when I am craving something Mexican. Recently I tried out the sushi at Yapona's by Costco. It was great! I'll take any of those, anytime. On Saturday night, David and I tried out the terriyaki at Rumbi Istland Grill. Even my kids like the rice and veggies there. The best thing about that place is that the leftovers taste even better the next day. Wow!

I'm praying for a better week than last.

Sunday Sept. 28

Today I have a fever. The on call doctor has some antibiotics for me. David has gone to pick them up. I don't have much nausea and I have been eating some food, but my throat is hurting and my stomach still feels swollen. I still have pain in my back. Maybe tomorrow I can see my Dr. in Salt Lake in case he can do something for me.
Last night I felt well enough to play a family game. Tonight I will be resting in my room instead.

Saturday, September 27, 2008

Saturday, September 27

I had a lot of back pain yesterday, so I stayed home and rested. Since the pain was getting worse, I put in a call to the Dr. and he called me back a couple of hours later. He told me to stop taking the oral chemotherapy, Xeloda. This morning I woke up with less pain than yesterday, so perhaps that was a good decision. I am feeling cabin feverish. I am ready to go out this afternoon and run a few errands. My boys are all playing with friends.

My abdomen is still swollen. I hope the chemotherapy will help it shrink. I feel kind of fat. The weather is beautiful and it cheers me up to look outside. I like the weekends.

Friday, September 26, 2008

Friday September 26

Thanks for reading my blog! It is fun to open up my account and see your comments and messages.

A few weeks ago I was full of fear and anxiety. Little by little it has been getting better. I felt a lot more peaceful yesterday, knowing that I have decided on a course of treatment and I have a lot of support from friends and family to help me when I feel sick. I like to be up around and doing things, so I have tried to be as independent as possible in the past. At this time, however, I feel like God wants me to learn to rely on others and allow them to give service and comfort to me during my illness.

My parents will be going home to California this weekend. They have been taking me to my appointments, organizing my house, cooking dinner, and watching my boys after school. They are planning to return when I have my next chemotherapy treatment, two weeks from Wednesday.

Today I woke up with a lot of pain in my back. I had the same problem yesterday. Ironically, I just went to meet with the pain management Dr. yesterday afternoon. Sometimes I feel like I get the pain under control in one area and then it flares back up somethere else! So far, since my treatment on Wed., I'm not nauseated, just queasy.

Good news! I was sitting down to dinner last night and the phone rang. Caller ID indicated it was my new clinic - Utah Cancer Specialists - in Salt Lake. I was quite amazed to hear the voice of my new doctor on the line. He was calling to personally check on me and make sure I was not having any bad reactions to the chemotherapy. I am happy that I switched doctors and I am really glad to have Dr. Shehadeh because I think he really cares.


P.S. Check out my high school reunion page: http://www.classreport.org/usa/ca/stockton/ehs/1989/

Thursday, September 25, 2008

Thursday, Sept. 25
I had a long day of chemo yesterday. After meeting with the Dr., it took an hour for the nurse just to set up my medications. I had to have an anti-histamine and some anti-nausea drugs drip for an hour before they started the Ixmpra, which took 3 full hours. It was the first time the substitute nurse had ever administered Ixempra, as it is a very new drug. David picked me up at 5 PM, just as everyone else in the clinic was ready to go home as well. The second drug, Xeloda, I have to take in the form of a pill, twice a day.
My stomach is queasy, but I don't feel like throwing up. I'm trying to keep some food in it so I don't get as much nausea. This afternoon, I am going to meet with the pain management Dr. again. So far, the changes he made have helped me a lot with pain control. I have a week to wait and then I'll go back to the clinic next Friday to make sure my blood counts are up. Chemo can kill many of the good blood cells, so I am glad the Dr. is monitoring those.
Bye for now,

Wednesday, September 24, 2008

My cancer history 2003-2008

I am a 36 year old stay at home mom with a Master’s degree. Despite my education, I have never held a full time job in my life. I am a textbook example of the need for breast self-exams, as well as the need for regular check ups at the ob/gyn. I noticed a lump in my right breast in the fall of 2002. I remember watching a talk show about breast cancer and I specifically thought, "My lump can’t be cancer. At my age, it is almost certainly benign." I guess I figured if I ignored it, maybe it would go away. David and I celebrated our 10th anniversary that December. In January, we decided to sell our starter home and move into a newer and nicer home, close to David’s office. We made an offer on our house the same day we saw it; the house had been on the market only one day before the owner put out the "sold" sign.

In January, I decided to make an appointment with a surgeon. During the office visit, he asked me to have a mammogram in February before he could remove the lump. The technician called me back the same day and asked me to come for an ultrasound. The radiologist did a biopsy and the next day I was reeling from a diagnosis of breast cancer. I was 31 years old.
The year 2003 was one of surgery and treatments. I had a lumpectomy, mastectomy, oopherectomy and axillary dissection (lympyh nodes removed under my arm.) I had a PET scan which found that the cancer had already spread well into my bones, putting me at an immediate Stage IV. Instead of chemo, my oncologist recommended tamoxifen and later I had six weeks of radiation to the chest wall that autumn.

2004 was my year of reconstructive surgery. A plastic surgeon did a TRAM flap reconstruction and I was happy to look more normal again. The insurance paid for everything, after the deductible and out of pocket maximum had been met, of course. We estimate that it costs around $9000 to keep me alive, each year. That includes my insurance premiums which cover the entire family as well, though they rarely need the coverage. I went from being healthy to being terminally ill in a matter of weeks, but of course the cancerous tumor had been growing in my body for 8 or 9 years, probably since the time I had my first child in 1994.

Fast forward 4 years. My cancer has slowly but surely marched throughout my body, taking hold in new places and causing new aches and pains. Every year, I got a little bit sicker, had a little more pain, had more frequent tests, and new treatment changes. In March of 2007, the oncologist found evidence of cancer on my liver, so I began chemotherapy. I was worried and scared, but I believed that by enduring the horrible side effects, the chemotherapy drug could help save my life, and prevent the cancer from spreading into my vital organs. After five months, I couldn’t stand the treatments any longer. I got weaker after each treatment and it was harder to bounce back before the next treatment knocked me down. I thought, "Surely by now the treatments have killed those cancer cells." Every month I would need a blood transfusion to replace the red blood cells destroyed by the chemotherapy drug.

I took a break from chemo and started a part time teaching job in September, 2007, at the charter school my childern attend. Unfortunately, without the treatments, my pain began to get worse. My bones ached and I was tired and worn out. I would come home from work and take a nap, as the pain medicine made me sleepy and I was catching up on sleep, since I got up early for work. By November, I could no longer stand it. I felt like I had tried to beat back the cancer with the chemo, but as soon as I stopped treatment, it came roaring back with a vengeance. It made me wonder if the chemotherapy had left my body weaker, my immune system so taxed that I had more pain and more cancer than before I started treatment. Still that was all the oncologist had to offer me.

I wasn’t as sick with the second drug. Through Christmas and the winter, my pain was slowly but surely lessening and I had hope that the treatment was working. In April of 2008, my doctor ordered another PET scan. I was hoping to see improvement, but the news from my oncologist was not good. She reported more progression of the cancer into lymph nodes in my abdomen, numerous lesions on my liver, additional metastases in my hips, spine, shoulders, neck and knees. I immediately took the doctor’s advice to switch to a third drug. In August 2008, it was time for more tests and another round of bad news.

Suddenly I questioned my past decisions. Did chemotherapy actually make my cancer worse? Why do I keep getting sicker? Why doesn’t my doctor give more hope or more options?
I was confused and overwhelmed at the sheer number of websites about cancer therapies, many of which contradict each other or vy for your attention with helpful anecdotes of miracle cures and remissions. Whom to believe? Where to turn? Suddenly I could not take my doctor’s word for absolute truth. It was time to stop and reevaluate, but I had less time than I had counted on.
Three weeks ago, I spent the better half of Labor Day at the ER, where my liver tumors were enlarged enough to give me abdominal pain and trouble breathing. All tests pointed to the cancer as the cause. After several doses of morphine, I was sent home with the instruction to follow up with my oncologist on Tuesday morning. I was sure she would want to see me. I imagined she could recommend some type of treatment for my pain, perhaps radiation, perhaps the new radio frequency ablation, or the cyber knife?

The reaction of my doctor blew me away. She wanted to know if I had enough pain medicine. When I said no, she instructed me to ask the nurse for my prescription. "What should I do about my liver pain?" I wanted to know. "These episodes are to be expected," she said calmly and ended our conversation. Stunned, I tried to re-analyze what just happened. Does my doctor care if I die? Does she just expect me to take pain medicine to "make me comfortable" until my liver fails in the coming weeks or months? Does she expect me to take her only recommendation of more chemotherapy, so I can live out the remainder of my days with nausea and baldness?
That day, I decided to get a new doctor. On my insurance plan is an oncologist in Salt Lake. Born in Jordan in the Middle East, Dr. Shehadeh attended med school at University of Michigan and recently practiced at the University of Minnesota. He has four children himself and seems to care about me and wants me to improve my situation. He has recommended a combination of drugs, beginning with two infusion treatments, once today and once in 3 weeks, of a new taxane drug called Ixempra. I will also have an oral dose of Xeloda, a chemotherapy drug which is taken in the form of a pill. In 6 weeks, Dr. Shehadeh wants to do another PET scan to see if the chemo is shrinking the tumors.

I’m a little scared today and worried that I will be quite sick in the next few weeks. One blessing is that a new pain management Dr. met with me last week and prescribed some new pain medicine which has helped to keep my bone and liver pain under control, so I will mostly be fighting nausea and fatigue, with the chemotherapy. I also got my hair cut short yesterday, as I anticipate having to wear my wig once again.

At the same time, I feel blessed and don’t have the time to list the wonderful friends and family who have called, written, left messages, sent flowers, given gifts of comfort and inspiration, have helped with my children and my household and so on. I created this blog so you can connect with each other and I can read your comments and write my own. I’ll try to answer your questions. I appreciate your prayers and your love.